I used to take Spinning class all the time. Then suddenly, after a year or so of going to class I started to experience a burning itch and by the end my crotch hurt so much I could barely stand it. So naturally, if my crotch hurts, everyone else’s must hurt too, right? So suck it up! And I could never wear tampons. They were uncomfortable. Tampon commercials always boast, “Now it doesn’t feel like a diaper anymore!” Yeah but it feels like a big metal rod lodged in between my legs. So naturally, everyone else must be crazy for wanting to wear them! Unbeknownst to me at the time there is a condition that affects millions of women, but that nobody seems to know about. I like to tell people, “My vagina is broken”.
Lots of times VVS can be caused by little ridiculous things like using scented soaps to wash up, or wearing non-cotton panties. Even drinking too much caffeine, STD’s, and cancer are on the list of possible reasons why you might be having problems under the hood. However after you run down the list, try some creams, and use a cookie cutter on your vagina to make sure you didn’t pick up something creepy from the toilet, its official. You have vulvar vestibulitis.
At first I thought it was just something I was doing wrong or wasn’t getting aroused enough. Plus, it was such a weird, awful feeling I thought it would be impossible to find an actual name for what I was feeling. It was too . . . esoteric to try and put into words. But after one night of sensual pain, I went on the internet to see what I could find. I sat at the computer for a while, at a loss for what to type in the search field. When you have a pain in your back, you type back pain. Or when you have a pain in your stomach you type stomach pain. So, skeptically, I typed “vaginal pain”. “Vulvodynia” began to appear in a lot of the web pages that came up. (Note: the more correct term is now vulvar vestivulitis. You will still see vulvodynia around, though.)
But there wasn’t a lot of information. I thought the possibility was high that this could be my answer to all my burning questions. And they were literally burning. After the pain started during sex and bike riding it cropped up in other situations, too. Of course these were usually public situations where it is not all that common to grab your crotch and craddle it. Sitting in class, standing in line for something, or hanging out with friends became common burn times. I eventually developed a subtle wiggle, where I could be sitting and look like I was moving to some rhythm in my head or on my headphones or being particularly happy. When really I was trying to relieve my vagina of the itching and burning in a nice, pleasant way, so as not to disturb or distract those around me.
I have been through the gamut of tests with two different doctors, and apparently nothing else was causing my pain. In fact, doctors aren’t really sure why vvs occurs, which is why treating it is just as fun as having all the tests to make sure you have it in the first place. Some gynecologists know more about it than others. Some specialize in it completely, though they are few and far between. The two that I have seen so far were very lovely ladies. However, they seemed more interested in making sure my pain wasn’t being caused by something else, than actually trying to treat me. I wanted to scream at them, “Well I’m glad we’ve pinpointed it girls, but now what? It still hurts!” I was finally diagnosed by a gyno that I went to just because my mom went to him. He delivered my brother. He said, “I can give you steroid cream or surgery. The surgery works 50/50 and you can only use the steroid cream for so long before it starts to errod the walls of your vulva.” That’s ok. I’m full, thanks. There were no vulva specialists anywhere near me, so I figured I was relagated to a life of pain. My pain never went away during sex, but I got to the point where I could try different things to where the good feelings outweighed the bad. During non-sex times, mine was a mild-moderate case. It popped up a little every day to remind me it was still there in case I forgot, which is so nice.
And then out of the blue, with no explanation, and no treatment, it went away. About two years after that first spinning class the pain went away. During sex, during bike rides, sitting down. It just stopped. I have no idea why. I have no idea if it will come back. I am constantly afraid of doing something that may trigger it again. I kind of have survivor’s guilt. Going back and reading some of the things I wrote in the midst of it, I can’t even remember what it was like anymore. To feel that every day. To have sex ending in intense pain, overflowing, snot-driven crying, and emotions heightened through sexual tension. Other women, my other NVVO women, are still experiencing pain everyday. I have been pain free for almost two years. I had started to forget. Then I had a scare about 6 months ago where I thought it might be coming back. It turned out to be an extremely minor yeast infection. But that’s what set me to thinking, millions of women still suffer from this and I cannot take that lying down. Even if it never comes back for me, I have to do something to help all of those who still feel that burning and itching. Who cannot have sex and cannot ride bikes. I plan to help save the world. One vagina at a time.
My husband and I are trying to have a baby, even though my VVS could come back. You can read about updates HERE.